Kiley’s Story

My epilepsy does not define me, but it is a huge part of who I am

My epilepsy does not define me, but it is a huge part of who I am.

The world as I once knew it changed forever on the day I had my first seizure. I was on the way home from a cousin’s cross country meet when I lost consciousness and experienced my first ever tonic clonic seizure. A few days later, I was diagnosed with epilepsy. I can remember this day vividly, feeling scared, defeated, and  hopeless. What I didn’t know was that it was going to shape me into a woman with a perspective that sees the world for its true beauty in every moment.

Epilepsy stripped me of several abilities that I took advantage of before my diagnosis. No more being the starting libero on my volleyball team, no more locking doors, no more baths, and absolutely no driving. The list goes on, but as a teenager, these were the most frustrating things to hear. Doctors even told me that I would be lucky if I were able to go to college and live a “normal” life because of how much school I had to miss due to unlucky trials with medications. I felt that I had lost all control of my own future and was stripped of my independence. Needless to say, I had to learn how to adapt to uncomfortable situations at a very young age.

From this experience, I have learned many valuable lessons. The most important lesson that resonates with me is that time is precious. My experiences taught me that we never truly know what the next moment consists of no matter how many precautions we take or how much planning we do. Being prepared for disasters and adjusting to them appropriately is in my nature.

Before my diagnosis, I thought I had a blueprint of how I wanted my life to turn out. I was going to finish out high school as the libero for the volleyball team then hopefully get a scholarship to a state school and become a star player and excellent student. However, none of those things actually took place. I ended up being forced to quit the team and struggled through public school because my health made it so difficult for me to even attend school. It was at this time when I took it upon myself to transfer from public school to online school. This was before the pandemic and before I had any knowledge of how online school operated. I jumped into unknown territory without the knowledge that I would soon graduate high school 3 semesters early and jumped from a 1.6 to a 4.0 GPA. I surprised myself, my doctors, and most importantly, my family.

I have my family to thank for being by my side during my most troubling years. They were there to make me laugh even on the days when I couldn’t get out of bed. My mom’s love and dedication to my health taught me that I seek a family bond in every collective group I’m in. Her daily sacrifices to make my life comfortable made me feel like I deserve a fulfilling life. My drive for school and work stems from her drive to have a healthy and happy family. I would simply not be where I am today if it weren’t for my mom’s strength and my siblings’ humor.

Things finally started to fall into place once I started homeschooling. A new doctor found the right treatment for me, I was seizure free for over 6 months, and my mental health was making rapid improvements. Despite what my doctors told me at an early age, I was able to enroll in college courses just as I wished. I was extremely nervous to jump into this because I spent years mentally preparing to have a very basic life path that didn’t consist of higher education. Then, I went for it. I graduated from my community college with my associates degree and transferred to a bigger university where I met so many wonderful people that propelled me forward and encouraged my independence.

The growth I’ve made since my diagnosis still astounds me. I graduated undergrad while simultaneously taking graduate classes. Now, I am interning for CURE Epilepsy while breezing through my final year of grad school. I have been seizure free for over four years. I can drive. I feel rested after eight hours of sleep rather than eighteen. I can hold my head high with confidence and advocate for my needs now. Most importantly, I am a voice for other people with epilepsy who don’t have one. Teenage Kiley would be astonished by this turnaround. I wake up every morning feeling so grateful to have made it this far.

I will continue to learn many more valuable life lessons as my journey with epilepsy is not over and may still have some unexpected turns lying ahead of me. This time around, I am trusting the process because life taught me that our roads are already laid out for us, some people just have to take detours. My epilepsy has prepared me for many road bumps but also the blessings that come out of them. After years of silence, I am happy to finally share my story shamelessly.